Hole in the heart: Hope at hand

A little girl, aged 2, has a 'hole in the heart' and needs surgery. Donations are requested from the public by parents who cannot afford the cost of a life-saving operation.

Such advertisements are seen regularly in the newspapers and on television. Why should parents appeal for donations when Sri Lanka has a national health service that is free of charge?

One in 400 children in Sri Lanka is born with a potentially deadly heart defect. Most of these diseases can be cured completely with timely surgery. The government cannot afford the cost of more than 2,000 heart operations needed by children every year. With the existing facilities only around 600 operations are performed annually, while others are on a growing waiting list.

The waiting period is not a day, a week or a month but three long years.

Most of these children will not survive and parents aware of this are desperate for help. They sell whatever they are able to, get into debt and still cannot raise the necessary funds to go for that life-saving operation. To watch a child suffer and probably die knowing well that surgical intervention will enable him or her to lead a normal healthy life is the worst fate that could befall parents.

It was to help ease the pain and suffering of these children and their families that the Children's Heart Project (CHP) of Sri Lanka was launched. With assistance from the President's Fund, the project seeks to save children with congenital defects by increasing the number of successful heart operations performed annually and reduce the long waiting lists.

"We are targeting not the middle class or the lower middle class section of society, but rather the poorest of the poor from the remotest of villages in the country — people who are lacking in facilities and financial capabilities. Thus the beneficiaries are very selectively chosen," said a CHP spokesperson.

The term 'congenital heart disease' refers to a structural or functional abnormality of the heart or the vascular system that is present at birth. These diseases are usually due to a genetic defect, but are sometimes the result of maternal infections such as rubella or the introduction of toxins such as alcohol.

In some cases, depending on the type of defect, the child may be seriously ill at birth. With other cases, the symptoms and signs of heart disease appear later in life. The most common symptoms are difficulty in breathing and/or feeding, the failure to physically develop and in some babies a bluish discolouration of the lips, tongue and nails.

The most common congenital heart disease is a communication or 'leak' between the left and right ventricles of the heart, which are normally isolated from each other. This results in a 'hole' in the interventricular septum, called a ventricular septal defect or VSD.

Another common defect is communication between atria (the receiving chambers of the heart). This is called Atrial Septal Defect, or ASD. A third defect is a communication between the aorta, the main artery carrying blood outflow from the heart and the pulmonary artery (which normally closes at birth) which is called a Persistent Ductus Arteriosus or PDA.

These three categories account for the great majority of congenital heart defects.

Prompt diagnosis by clinical examination, electrocardiography, chest X-rays and most importantly 2D echocardiography is the first step in the effective management of congenital heart disease. Once a precise anatomical and functional diagnosis is made, the timing of surgical treatment and medical management depends on the type and intensity of the defect.

With modern diagnostic or surgical techniques, more than 75 percent of these congenital heart defects can be effectively treated, allowing the child to lead a normal life.

“Initially attempts were made to improve services and standards at the paediatric cardiac surgical centres and the Sri Jayewardenapura hospital. Funds were thus collected and expensive but essential equipment was donated. However, this did not significantly impact the long waiting lists,” the spokesperson said, adding, “Now CHP provides financial assistance of Rs. 50,000 per child to a limited number of children who need urgent surgery in private hospitals.”

Assistance is restricted to those who can be cured with a single surgery and where financial need has been documented and assistance from the President's Fund obtained. These children have to be evaluated and referred by the cardiologist at the Lady Ridgeway Children's Hospital in Colombo.

So far this project, with generous public contributions, has saved the lives of about 25 children by providing assistance for surgery.

How often do we spend money on what we don't need, while that very money can be utilized to help a family in distress so that a child who might otherwise suffer and die could be given a chance at life?

“We can further the aims of the project only with the help of the public,” the spokesperson emphasised, adding, “Anyone who is willing to make a donation of Rs 50,000, individually or collectively, is encouraged to get in touch with us.”

Donations can be made to The Children's Heart Project of Sri Lanka, C/O Ernst & Young, 201, De Saram Place, Colombo -10. Tel: 2694469, 2699289. Fax: 2697369.